Palliative Care for Disenfranchised Populations
Palliative Care in Resource-Constrained Settings for People Living With HIV and Other Life-Threatening Illnesses
The palliative care concepts and techniques originally developed for people with cancer and now being applied to people with HIV/AIDS are vital to all nations.
The United States is extremely fortunate to have HRSA’s Ryan White CARE Act, which provides funding to underwrite care for people with HIV disease who would otherwise have little or no access to services. Ironically, those receiving care through the CARE Act may have access to a range of services—especially support services—not easily obtained through health insurance. Within this system of care, palliative care is being embraced as a framework for keeping difficult-to-serve patients from “falling through the cracks” of the health care system. To that end, five CARE Act Special Projects of National Significance (SPNS) Projects have been funded to document and evaluate the use of palliative care for persons with HIV/AIDS.
Demographics of the Study Group
- 46 males, 36 females, 3 transgenders
- 93 percent African American
- 38 have died (44.7 percent): men’s median age, 41; women’s median age, 39.
In the United States, we are currently seeing several cohorts of people with HIV disease. Some patients were diagnosed early in the epidemic and have been able to remain on highly active antiretroviral therapy (HAART); they may or may not be developing long-term side effects from these medications. Others are no longer benefiting from antiretroviral therapy and are experiencing decline, both from the medication’s side effects and from the disease itself. Still others have more recently seroconverted or may be unaware of their diagnosis and present to hospitals with opportunistic infections or full-blown AIDS. Many of them often have a history of intravenous drug use and live chaotic lives.
Our SPNS project in Baltimore, Maryland, is built on the model of a traditional hospice program with the addition of an addictions expert and an outreach worker. The challenge for us was whether such an augmented team devoted to comfort measures and truth telling could keep patients enrolled in care long enough to identify health proxies and plan for end-of-life issues, while improving their daily quality of life. We hoped that forming relationships with patients and their families would serve as a mechanism for accomplishing these goals.
Initially, we conducted one-on-one interviews to clarify language about end-of-life. We then conducted five focus groups with those who attended a Healthcare for the Homeless clinic within walking distance of our hospital. Our technical definition of homelessness is an adult having no residence listed in his or her own name. This population is difficult to identify; they often do not see themselves as homeless because they often stay with family members or friends for brief periods. As a result, the home addresses they give are often not where they can be reached. Several shelters and other nongovernmental organizations provide mailing addresses for homeless people.
About 94 people have enrolled in our program. One person withdrew because of the burden of answering multiple questionnaires. More than 90 percent of those in our project are African American; the median age is 40. Forty-one (45 percent) have died since we started the project. More than 90 percent self-report injection drug use as their HIV exposure category. Several non-drug users were women exposed to HIV through heterosexual contact with men who used injection drugs.
Characteristics of Study Participants
- Substance Use
— 82 percent of current enrollees are active users
— 84 percent of enrollees who died were actively using at time of death. - Proportion With Histories of Homelessness
— 55 percent of current enrollees
— 65 percent of those who died.
Fifty-five percent of current enrollees and 65 percent of enrollees who have died have histories of homelessness. In the focus groups, we learned that the sentiments of homeless people reflect those of the larger population when it comes to discussing end-of-life issues. That is, they would prefer to avoid such discussions. Some thoughts expressed by group members included the following:
I do not want to talk about it (dying). I do not want to think about it. If I really have to do these things (advance directives), I want you to keep me alive as long as possible, unless I will not be able to live the way I want to live.
Focus group members also expressed themes reflecting a high degree of transcendence, or belief in a higher power that can assist with bearing the burdens of everyday life.
The homeless have little control over where they die. Frequently, they die in institutions after they are found on the street and brought into the emergency room. One focus group member said that he wanted to die on a particular bench in a specific park where he spent many days sitting. However, he was subsequently brought to the emergency room unexpectedly and died after removal from the ventilator days later.
In fact, 45 percent of our study group died quite suddenly without the extended medical symptoms seen earlier in the epidemic. It is not unusual for a person to be admitted through the emergency room, placed on a ventilator, and then allowed to die (with or without family present) without the benefit of written advance directives. These scenarios often play out because the homeless person has had no communication with family members; was deposited by an ambulance at a random institution; or has family who arrive at the hospital demanding that “everything be done” but are unwilling to face the impending death of their son or daughter, brother or sister, mother or father.
Challenges
Personal Barriers
Many of our patients have some form of mental illness, including addiction. Many lack adequate coping skills; they are typically loners who live outside society and turn to drugs to obliterate their feelings of fear, confusion, and separateness. Although they usually want to have an apartment of their own to call home, they cannot manage the bill paying, the upkeep, or even the need to secure food. Anything requiring as much attention as health care becomes overwhelming at some point. A high number of our patients are illiterate, and some are almost completely dependent on our staff.
Nature of Enrollees’ Deaths
- Place of Death – 89% inpatient
— Nursing home: 11 (3 with hospice care)
— Inpatient hospice: 2
— Hospital: 23 (emergency room: 3; intensive care unit: 11) - Cause of Death – 39% AIDS-related
— End-organ failure: 5 (renal: 3; liver: 2)
— Sepsis: 13
— AIDS: 15 (pneumonia, 9)
— Other: 3 (overdose, 1)
Environmental Barriers
For our patients, HIV disease is simply one of a million things they have to cope with. More often than not, it is not the first thing on their list. For example, people without a home base have no place to keep their personal belongings. Most of the homeless people we care for wear small pouches around their necks to carry personal items; however, they do not usually carry their advance directives. More generally, what our patients want and what we need to do to take care of them are in conflict. Finally, our patients are not familiar with the concept of palliative care—but they think it is great that a team of people is going to do anything for them, any time they want, and to take care of them.
Our patient population is extremely transient. We always have at least two or three people on our active caseload who are in jail. Sometimes we are able to visit them, but often we cannot. Depending on the jail, some of our patients will get medical treatment, but many will not.
Systemic Barriers
Another significant challenge is our health care system, which is not truly a health care system. We have the Ryan White CARE Act to fill the gaps in the health care system for people living with HIV/AIDS; but even with the CARE Act, significant barriers to care still exist. For example, we spend a lot of time trying to get people into methadone treatment programs. There are never enough slots, so we have to work with the providers and the client until we can get the client into a program. It is ironic that when clients finally decide to seek treatment, they must have dirty urine on the day they go into a methadone program or they will not be treated. Incredibly, after all the time we spend trying to help clients get to a place where they are ready to address addiction, we have to call and remind them to use drugs before they go to the treatment clinic.
Clients’ Challenges with the System
- The United States has no real system of health care.
- Often, health care workers and the public have a punitive attitude toward those seeking help for addictions. For example, dirty urine is expected when enrolling in a drug program.
- The homeless are expected to wait endlessly for services:
— 6 to 8 hours for the emergency room
— 3 to 5 hours for the clinic
— 2 to 3 hours for the methadone program
— 4 to 6 hours for social services offices.
Substance abuse in Maryland no longer qualifies people for disability, which was the primary way most of our clients received the disability status that gave them health care coverage. Lack of access to disability status increases pressure on programs like the CARE Act programs. Even for patients who qualify, disability benefits are sometimes inadequate for covering the cost of medication, again increasing pressure on the CARE Act.
Another significant barrier to care for our clients is the time required to access services. For example, a homeless person must go to one part of the city to get a form, then travel to another part of the city to turn in that form. Each visit often requires that they wait for at least 2 hours before being seen. Even seeking services at a methadone treatment program can be particularly difficult. There is always a large crowd at the program site and eventually someone will emerge and treat those waiting as if they are cattle. How can we expect anyone to maintain a good self-image when he or she is not treated with respect?
The Medicaid HMO Model. Maryland has placed all of its medical assistance and Medicaid services for people without insurance who qualify for public assistance into an HMO model. Even well functioning, middle-class people find the HMO model difficult to negotiate; for someone without a phone, alarm clock, or stable address, it is impossible. Program enrollment is especially cumbersome. Every year, clients must reapply for enrollment. The State agency mails a reminder, but many of our clients have no address. When they come to us for care, we have to inform them that they are no longer covered.
An additional problem is that Medicaid HMOs require us to go through a pre-approval system to give our patients the medication they need. That referral system, like the HMO system, is inefficient: If a patient falls out of care, he or she cannot come back to our site without a referral from another doctor.
Transportation. Recently, one of our patients had to go to the emergency room. We tried to get an ambulance, but the Medicaid HMO refused our request based on their requirement for 24-hour pre-approval for that service. We had no choice but to take the client to the emergency room ourselves. When our clients are very ill, we can sometimes send cabs for them, but cabs often do not wait, not realizing that the person has problems getting out to the street. Increasingly, our clients have end-stage renal disease and at least half are on dialysis. They must wake up at 5:00 a.m., wait outside for the bus to take them to dialysis, then sit and wait for their dialysis. If they also have a clinic appointment that day, they most likely will miss it. When they finally arrive at the clinic, they are told that because they did not arrive on time for their appointment, they must wait until another appointment opens up. In this way, the system actually increases the burden on the patient to remain in care.
Five Conversations to Have for a More Peaceful Death
- Thank you
- Forgive me
- I forgive you
- I love you
- Goodbye.
Study-Related Challenges
We were challenged to find patients who wanted to enter our palliative care program. For those who agreed to enroll, we discovered that our survey instruments were too long to be practical and were not adapted to the population. Our solution was to hire an outreach worker. We interviewed seven experienced HIV outreach workers, but none wanted to embrace the palliative care model because it ran counter to their training. Many applying for the job had a “cheerleader” approach to care and were not comfortable accepting death. Finally, we identified someone willing to learn about palliative care methods and philosophy, but other challenges arose. For example, in addition to our staff grappling with end-of-life issues on a daily basis, they also experienced fear of being arrested in drug-infested areas.
Culture- and Stigma-Related Barriers
We also must deal with cultural and stigma-related barriers to the work we do. For example, African American mothers suffer greatly from the stigma of HIV disease. Their communities believe that it is better to be a drug user than gay. As a result, many African American mothers are isolated.
We view the mothers of those who are dying as unsung heroines. They see their children dying at an early age and must struggle with decisions that no parent should have to make. For example, when options were exhausted for one of our patients being treated for brain damage received in an automobile accident, the hospital wanted to remove him from the ventilator. His mother absolutely refused. She could not give up even after her son had been brain dead for weeks. When I tried to convince her that it was best for him to be removed from the ventilator, I found out that she had had four children: Two of them had died of AIDS, and one had died a violent death. Our patient was her fourth child, the last one alive.
Many people in the African American community are afraid of being denied care or of becoming unwitting subjects of medical experimentation. They want to make absolutely sure that everything has been attempted when their loved one is in the final stages of life.
More than 90 percent of our enrollees have a history of substance abuse. We have learned that the drug-using community has a hierarchal structure and that those within this community have their specific jobs. The middlemen, for example, provide drugs for different people and, in exchange, receive a cut of their customers’ drugs. This way, the middlemen never have to spend any of their own money on their drug habit. When our patients decide to quit drugs, they apply the 12-step Alcoholics Anonymous model. This approach is critical to their success because it capitalizes on the importance our clients place on spirituality.
Conclusion
Symptom management is important, but if we cannot provide it, the least we can do is help people think through what they need at the end of their lives. We use a list developed by a hospice nurse of five conversations that need to occur before death. The first point is that the dying person needs to say, “Thank you for having me as your child, thank you for providing my schooling, thank you for feeding me and loving me.” The second issue is to ask for forgiveness, which is one of the primary things that people in every culture need to do before they die. In many religions, asking for forgiveness is the one thing that must happen before death; the patient then needs to have the opportunity to express forgiveness to others. Forgiveness lays the groundwork for saying “I love you” and the final goodbye.
We provide palliative care so that our clients can close their lives in a positive way. We help them die peacefully—whatever that may mean to them—and to have the conversations they believe they should have.
